Sunday, February 22, 2009

Estate Planning - Or should we call it Procrastination Planning?

One of the first ten or twenty things we learned about after discovering Ellie has Down Syndrome was that when we re-write our will we need to create a Special Needs Trust for her. It seems that people with disabilities who are going to rely on Social Security and Medicaid and other state services are not allowed to have much, if any, personal wealth. By that I mean something like less than $2,000. But what exactly is a Special Needs Trust, and how do we go about writing one? If I remember correctly (mommy brain says, "don't quote me") $2,000 was the magic number when we applied for Medicaid in Alaska, and Virginia. Approved in AK, but denied in VA. That's another blog, ugh.

Back to Special Needs Trusts. I still don't know the exact answer to those questions. What I do know is that when we rewrite our will, which we've been putting off for 4 years now, we shouldn't name Ellie as a direct beneficiary. Nor should our family name her as a direct beneficiary. Once we have that Special Needs Trust we can have that Trust be our beneficiary. We can use trust money to provide various things for Ellie. I'm not sure exactly what. More things I have to find out.

Since it's so complicated and deals with the issue of what to do if we die early, I tend to put this off. That's not the mature way to handle things, but it's my coping mechanism.

Friday, February 20, 2009

Weird Conjunction of Events

So, I'm in Spinning Class tonight. Alex is at swim team, and Ellie is at her favorite place - the nursery at the YMCA. And I'm finally getting a workout - yippee! The Friday instructor plays an eclectic mix of music. In the middle of the class Kenney Chesney started belting out "I Go Back".

My own Time machine

If Doc Brown can make one from a DeLorean, I can make one from a Honda Odyssey. :) It's an easy recipe: Take one Honda Odyssey, and just add Ipod!

The kids like to watch a movie on the way to swim team. It's a 25-30 minute ride, each way, and usually the only tv time my son gets during the week days. So, I eat those "I'll Never Let My Kids Watch TV IN The CAR!!!!" words I used to utter. But, I get tired of hearing Tom and Jerry cartoons (their latest craze) over, and over, and over, and over, ad nauseum.

Now, I hope this isn't a rule breaker, but if it is, I just hope I don't get caught. I plug my Ipod in a toss one or two ear buds in I'm instantly transported. It's amazing how a song can take you back. The B-52's "Roam" instantly transported me to Lancaster County countryside circa 1990. I had graduated from college and had NO idea what to do with my life. I knew I didn't want to stay in Lancaster, but I was unsure of breaking out on my own. I would drive around the county, through corn and tobacco fields, past Amish and Mennonite farms still operating as they had for 200 years - no electricity, no indoor plumbing. I would search for a Turkey Hill and get some of their great iced tea, then drive on exploring the countryside.

I wondered what my future had in store for me? What do I have to offer the world, and what does it have to offer me? Where would I be in 20 years? I know the answers to some of those questions now. And those answers, especially the two sitting in the back seat, put a big smile on my face. I love my time machine!

Wednesday, February 18, 2009

Private Therapy vs. School Therapy vs. No Therapy

What to do? In Ellie's short 4 years of life, for a whole variety of reasons we've had our time in each camp. All in all I think private therapy is fantastic if you can afford it. For us - we do a combo treatment of PT which Ellie usually hates with Speech which she usually loves. This works well because the Speech Therapist distracts Ellie from the thing she hates that the Physical Therapist is insisting that she try to do "just one more time". I hear giggles and laughter down the hall. If it were just PT I can't imagine the fits she might throw.

The School District seems to think that Ellie doesn't need PT. According to their records she can walk down the hall, navigate her classroom and the playground so she's fine. Of course she can't manage the steps of the bus on her own, she can't balance on one foot, she only just started kicking a ball this week (Yippee), and she can't run, hop, skip, jump or navigate steep or rough terrain on her own. The list could go on, but I'll spare you. All of these are things that a 4 year should be able to do. So she receives no PT through the school. We are fortunate to have good insurance and we can manage the weekly co-pays. As a co-treat there is only one co-pay, so it does save us some money and gives us more bang for the buck as we only get 75 total visits covered a year.

Speech is the only therapy she receives at school. Of course her speech is so delayed I should hope so! She also receives the private Speech, and I am grateful for it. She is not so thrilled with the school therapist who focuses on oral motor, but she loves the private one. I am hearing an improvement (albeit slight) in her articulation. She talks a tin ear off you - but so much of it sounds the same that you have no idea what she said. We continue to use the sign language and have added so many new signs - including a push to use numbers and letters. It's amazing to see that she is learning to count and have letter recognition. I thank God for Sign Language every day! Our sign language has all be done at home. We were introduced to it through the Early Intervention group, but a friend introduced us to the program we use and love: Signing Time.

We had been on a waitlist for private Occupational Therapy for 9 months. We just got off the waitlist, but due to a rise in co-pays and a concern I have that we would max out our yearly limit of 75 sessions total I opted for every other week on the OT. We saw so much improvement over those 9 months without therapy that I am not totally convinced that Ellie needs or will benefit greatly from OT. She does have internal rotation of her wrists, but she does compesate well. She gets very defensive when I try to do hand-over-hand assistance. I keep trying :) and sometimes she allows my help. I don't know that there will be a much faster learning curve with therapy in this arena. She does need extra assistance in many self-care areas - of course the school doesn't recognize them - getting dressed isn't something you should be doing at school. So, perhaps we will keep Private OT, perhaps we will end it. Magic 8-ball says too soon to tell.

In my experience private therapy can be a great addition to what ever services the school does provide. but there 's a caveat. You have to look at the whole child and recognize that your child changes. What worked at the age of 2 doesn't work at 4 years old. Re-evaluate periodically and keep the lines of communication open with the therapists. We have done that when Ellie wasn't "clicking" with a therapist: we went through 3 Physical Therapists in 2 years in Alaska till we found the right one.

Wednesday, February 11, 2009

Bring Out Yer Dead!

Chicken Pox? But, I'm not dead yet!

So, we are resorting to the age-old custom of quarantine. Ugh. It's only Chicken Pox. When I was a kid, they sent you to school. Every kid should experience the calomine-lotion-crust-covered-itch-fest that is Chicken Pox. It's a rite of passage.

But not in this kinder-gentler-lawyer-driven world in which we now live. I was going to take my possibly (we still aren't certain it's Chicken) pox covered preschool daughter to an awards assembly. Her healthy big brother was receiving an award at his school today. He was so thrilled! He was crushed when yesterday I said, "Maybe I shouldn't go. Since Ellie might have Chicken Pox." His face fell to the ground. So, I lessened it by adding, "Well maybe I'll come. I could put Ellie in the stroller so she's not touching everything and everyone. Unless the Doctor calls and tells me otherwise." He perked up quickly. Getting sushi for dinner helped too.

So, Guess what? Today, Ellie and I were all ready to go. Took showers, got dressed up nice and pretty. We were going to drop books at the library and pick up some apples and things at the store, then head over to the school. Camera battery was all charged and everything was set.

You see, Ellie is not looking or acting sick. Well, except for the 2 dozen red dots all over her face. They aren't really anywhere else - excepting for one on her wrist, one on her collar bone, and a few in the diaper area. Ok, I guess there are a few more than yesterday's 1/2 dozen on her face. Hghmmmmmmmm......

My Doctor's nurse called an hour before we were going to leave. "How's Ellie?" I explained how she seems fine excepting for these little dots. "What did Doctor .... tell you yesterday?" I reiterated that we were staying home from school. My Doctor's office called me back within 10 minutes of my explaining how Ellie looked and felt (she is happy as a clam, eating well, playing, etc.) and that we were thinking of going to the Awards Assembly. "No, no, no.... " siad the Nurse. "Dr. .... said it's HGHLY contaigious. In a well ventilated building she could be on the first floor, and some one on the third floor could get her Chicken Pox."


So, I hastily penned a note to my son's teacher. "Please tell him how SORRY I am!" And I sit, and eat chocolate, and blog. But not in my pajamas. We are all dressed up and nowhere to go.

Sunday, February 8, 2009

In Memory of Dr. Cohen

I had the great pleasure of attending a lecture by Dr. Cohen last year. He was the keynote speaker at the Down Syndrome Association of Northern Virginia's annual meeting. Thankfully I made the trip with Ellie and attended the meeting. He spoke with honesty and humour about topics that can be uncomfortable for many of us: late potty training, eating and chewing issues, bowel and digestion issues, hearing and vision, sex education. The list went on and the questions didn't stop. Dr. Cohen kept up - patiently answering our questions while the littlest ones played in the background.

It was with great sadness today that I learned of Dr. Cohen's death. The community of families of people with Down Syndrome have lost a wonderful person. My condolences go out to his family and friends. He will be missed.